Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

This afternoon I was up in London seeing my lovely neurologist. As usual I went armed with lots of questions. I feel very blessed that I see such a lovely man, who listens to everything I have to say. His manner is very calming, I hate needles, but his calm attitude puts me at complete ease, I would never let anyone else stick so many injections in me. I was excited to see him and to show him how much progress I have made with creating my life around my symptoms.

We went through all my queries before my injections and he was so helpful with each one. He is going to write to my GP explaining that I need the IV antibiotics for Lyme Disease, I am relieved he has agreed to do this as it means I do not have to argue with my GP about it. I have a severe intolerance to Lactose, which unfortunately all but one of medications contain. At first this was fine as my body was coping with the small amount, but now that it has slowly built up in system my body is reacting and is making my other medical conditions, e.g IBS, worse. The most annoying issue with it is that no matter how much time I sleep for I wake up feeling like I never went to sleep and I find it hard to keep going in the days, my neurologist has offered to get the pharmacy at the hospital to look into alternatives for me. This would make such a big difference. We have also juggled around my next two appointment to make sure that my jaw is in working order for Christmas and my 21st birthday.

We spoke about my functional paralysis and agreed that in a way it was positive as it was less disruptive to life, although it is not ideal. There is not much I can do other than take pain killers and try to stimulate the part that is paralysed in attempt to disrupt the incorrect signals that are being sent – this has not worked yet but I shall keep trying. I had my eyes, jaw and neck injected with Botox so my spasms shall continue to my kept in check and my jaw tremor should soon settle down for a few weeks.

It was a fantastic appointment. I am truly blessed to have such a wonderful neurologist looking after me.

 

 

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Comments on: "Fantastic Neurology Appointment" (8)

  1. Hey Bec,

    I am really curious (if you can share), what are you charged for the botox over there? I had one round done which was $500 out of pocket and $500 from the government (one off – next time I’d have the full thousand). Given that you generally need them every 12 weeks or so, I think I’d be on the streets trying to pay for it.

    Mike.

  2. Are you from London im from Windsor ont Canada I have Dystonia

  3. Karen Thompson said:

    Yes you are soooo lucky to have such a lovely man looking after you, just as I’ve been lucky to be under his care. Keep going with the positive attitude and I’m looking forward to meeting you very soon, lots of love my friend xxxx

  4. sandy evason said:

    so pleased to read that it was a very positive appointment and that there is some progress re: your GP. I pray that they get the lactose part sorted as you really do not need all the other bits to kick off. love, hugs and positive vibes continue daily for yoy xx

  5. Hi
    My name is Jenna
    I came across your page.
    Your smile just shines, you are a brave warrior, smilen champ, courageous fighter, determined inspiration, and a real super hero. you are full of life, smiles, and spunk. I am praying for you, thinking of you, you are in my prayers, thoughts and in my heart. I send you lots of hugs, smiles, friendship.

    I was born with a rare life threatening disease I have 15 other medical conditions and developmental delays. I have been told I won’t live long, but I am still here. I have almost lost my fight four times, and I kept fighting and I am still here. I have had 33 operations.
    http://www.miraclechamp.webs.com

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